Autism Graphics

In the last two days I have been sent two different graphics supposedly about autism, but that upon reading take my breath away because of their blatant inaccuracies and biases. The last one was in the shape of a pyramid in a shade of blue I’ve come to despise with the heading, “Impairment in Imagination” and I just wanted to cry. Impairment in imagination?

You have no idea how much I wanted to hit the delete button and scream or bite someone, which always reminds me of a scene in the British comedy, Shawn of the Dead where the main character’s mom is bitten by a zombie, but she doesn’t say anything until her son asks, “Mom, are you okay? Did he get you?” And the mother smiles weakly, as blood gushes from her arm and replies, “Well, he was a bit bitey.” Hilarious. Only what I was feeling when I read “Impairment of imagination” was not hilarious. No. Not at all.

Underneath that unfortunate heading was written, “Deficits in flexible thinking regarding interests, routines, perspectives and rules.” Two key words are used in these first two sentences “Impairment” in the heading and “deficit” in the second. The first is just incorrect and the second is a stereotype that while it may be true for some people it certainly cannot be stated as fact for ALL people. I purposely did not say “Autistic” people because rigidity and a reluctance to see another’s point of view are things many human beings have trouble with and this is not something that can be pinned on one specific neurology.

Below this, the graphic reads, “does not understand other people’s points of view or feelings.” Again I could list a number of non autistic people in the news who would certainly be terrific examples of this sentence. To suggest that this is a defining characteristic of Autism is inaccurate and plays into the whole “lacking empathy myth” that so many believe as fact about Autistic people. Please read Drs Kamila and Henry Markram’s Intense World Theory of Autism for another thought regarding autism. And by the way, the Markram’s, both of whom are neuroscientists, call it a “theory” because they understand that it is not scientifically proven fact, but a theory they developed and continue to tweak as they learn more. They are highly regarded, acclaimed, well published and the two people working in the field of autism whose work I believe will eventually change how autism is viewed.

The next line of text on the graphic reads, “Agitated by changes in routine.” This line would actually be fine if it weren’t for all that precedes it. But I would also suggest that this line could be said about all young children. And in the end this is my criticism of the information that is being given to people about autism. Autism as defined by a list of deficits that added up does little other than to create panic in parents of Autistic children. I’ve written about this before ‘here‘, ‘here‘ and ‘here.’ These posts are just a few examples of things I’ve written describing what fear did to me and why terror does not motivate people to make good decisions or help them decide how they can best support and encourage their children to be all they can be.

This particular graphic goes on with headings of: “Impairment in Social Relationships,” “Impairment in Social Communication” and at the base of the pyramid the heading says: “Additional Difficulties” where they list, among other things, “Appears to enjoy being held/restrained…” NO! This is absolutely wrong. You cannot write that someone “appears” to “enjoy” “being restrained” thereby justifying sadistic behavior done by staff/therapists/parents/ANYONE. And again, I want to SCREAM! Who is writing something like this? This is a graphic that is being used by a school for Autistic children. It is a graphic that is stating things as though proven fact. A graphic that parents, children, educators are seeing.

We have to ask ourselves – WHAT ARE WE DOING? How is it okay to publish such statements as though they are fact about a neurology that the best neuroscientists in the world are baffled by?

Please. If you are confronted with a graphic that is anything like what I’ve just described, do NOT share it. Do NOT believe that these things are a fact, just because they are written as though they are. Do not add to the misinformation by repeating it. DO NOT. It is statements like this, one page info graphics written by non autistic people, who are not neuroscientists, who seem to know very little about autism that cause tremendous damage to the Autistic population.

We must all become critical thinkers when it comes to information about autism. We know very little about the human brain. The best and smartest neuroscientists in the world are working hard to gain a better understanding. Most of what we are being told are theories, please let’s not treat these as fact.

66 responses to “Autism Graphics”

I’m feeling a bit screamy and bitey myself right now. GRRRRRRR.That’s the thing I don’t really get about some of my neurotypical “brethren” to have a mind-blindness when it comes to this fact. That WE do/feel the SAME things in different ways, in different amounts.

Strange thought – ‘Different but not less’ is a common autism phrase, and when reading your post, it strikes me that practically everything listed are all across-the-board HUMAN traits that we ALL often have challenges with. Often those on the spectrum have more challenges with some of these areas, but they are not just autistic challenges. It’s like ‘Different, experiencing MORE.”

Do you feel comfortable sharing this graphic by email, as I’d like to respond to them in a professional manner (wotedge@gmail.com)? If not, I totally understand. Thanks for all you do!

Unfortunately the old version, and the even older green version are still being used on the web in various other places when I search by image on Google: http://goo.gl/fOLWUH (Scroll down to ‘Pages that include matching images’)

It’s really worrying that people will uncritically share images that including incorrect or misleadingly general information like this, let alone claims about restraining being good.

Right, I find all of it deeply troubling. This was the sort of thing I was told and shown when my daughter was diagnosed and of course it didn’t immediately occur to me then that these ideas were just made up by anyone…

The specialist service who diagnosed me used the triad of impairments and the medical model for the diagnostic assessment and the report justifying the diagnosis and NHS funding, but after that they stressed that they don’t find the impairment / medical model useful for self understanding or everyday life and focused more on how to work to my strengths and self advocate to get understanding and accommodations for my challenges. This is much more positive and useful in my experience.

Thank you for finding that. Not that it needs to be shared of course (Ariane, THANK YOU for not posting the actual graphic with your text!), but I would also like to contact the authors of this with some strong words. While there are a few points on here that turn my stomach, I am struck by how the “Impairment in Social Communication” piece reads a bit like the author stopped thinking about autism and just starting thinking about how it’s so annoying when people s/he’s talking to can’t read his/her mind and want to talk about things other than the author. Seems like the author might have a bit of their own social communication impairment.

But at the end of that “Social Communication” list there is one that I’m really not laughing at: “Communicates for own needs rather than ‘social’ engagement.” I’m livid. I honestly can’t read that without my eyes narrowing to slits and clamping my jaw shut. To me, this screams “Autistic people are supposed to communicate for the purposes of everyone else. The goal is to make NT communication easier. If an autistic person tries to communicate (because remember from the other corner of this graphic, that autistic people don’t want to communicate – grrrr) it should not be to express their own needs or to meet their own needs, but should attempt communication to meet the needs of NT people around them.” Am I putting words in the author’s mouth? Absolutely I am. Does that make it less true that that is the message this sends out? I don’t think so.

The underlying goal of any therapy involving improved communication for ANYONE – autistic or not – should be that the person be able to get their needs me. To list off dozens of negative stereotypes and harmful generalizations and then claim that yet another impairment is trying to meet their own needs???? As an autistic person, as a pediatric researcher, as a speech pathology student, as a human being with empathy, I am completely disgusted.

Yes, you are right about the matter of seeing autists and other individuals as ‘lesser’ in terms of status on ‘The great chain of being’ – a place where the chief duty of ‘lesser’ is to make their betters look and feel as good as is possible.

Thank you for this post, Ariane. It makes me feel so much less alone to know that others see these things and are also outraged by them. Even more so when it is an ally who is outraged because I expect fellow Autistics to be upset, but it is a joy to me when someone who lives among us but is not Autistic themselves is able to see the outrage so clearly. It is a testament to the love you have for the Autistic people you know; love makes your vision so clear and true.

((Sparrow)) One of these days I will write a post about non autistic people’s glaring “lack of empathy” and list all the deficits of that neurology stating it as though “fact”… probably won’t be very popular though…

Oh, I think I may have already done so! Recent posts on ‘left-brain right brain’ (web site) has resulted in at least two thoroughly-irritated ‘Normies / NTs’ – who are becoming thoroughly resentful upon reading my attempts at explanation of the ‘unconscious’ nature of most Normal behaviors.

I just wish they’d had MY lessons regarding ‘forcible anti-instinct training’ – as in ‘gaslighting’ and attemps, parental and otherwise over the years, regarding a ‘cure’. (I wasn’t good enough regarding the ‘duties’ of a Narcissistic Extension’…)

Search terms: “Shamanic Initiation” autist. That should get you there.

One i hated was this 20 ft long couch w parent reading in one end and child on the other read “the longer a child w autism goes without help the harder they are to reach” ugh. While I agree that getting an early start is helpful, it has perpetrated this myth that if you dont get a billion hrs of therapy in and if your child isn’t perfectly fine by kindergarten (smdh) then you might as well just give up. I’m glad we knew early, I’m glad he qualified for developmental preschool, I’m glad he has PT, OT, and speech therapy to help with the more physical challenges. But even if all 3 take him on one day its like 2 1/2 hrs of therapy throughout the day (7 hrs a wk total between the 3) And between that and the rest of the school day, by the time he gets home its decompression time. I cant fathom having 40+ hrs of therapy a wk sometimes on top of preschool???because well we only have this short window.

All that to say, I agree, the info graphics and memes and stuff that gets widely shared, some of it is just plain sad, and harmful, and those are the viral ones…not boycottautismspeaks, or m Kelter, or Jess’s or any of the ones that should be…and that’s a shame.

Yeah, that whole – you’ve got this narrow window for your kid and if you miss it all is lost – thing is crazy making. There’s so much that is really awful out there regarding autism it’s like navigating a minefield.

Certainly no one is saying any kid should be neglected…But perhaps some of the hysteria around early intervention has been hyped up by a poor understanding of neuroscience. And if people are looking at the neuroscience for NT kids and making such a hash of it, what might they be misconstruing about kids whose skills sometimes appear like “night-blooming flowers”? (http://wearelikeyourchild.blogspot.ca/2014/03/night-blooming-flowers.html)

Your comment, Ariane, about fear being a poor motivator brings to my mind the Nazi era, and before that the criticism and denigration of women as being “different” in feelings, understanding, and ability to men who only wanted to preserve their own positions of power. And today of African Americans (still), Native Americans (still), Muslims listed generally as “terrorists”.

Do the people who composed the graphic not realize that they are echoing themes of the past? Themes that will always be used, alas, for those in power to put down those not in positions of power? What is wrong with humanity? Must we continually line up with “us” as against “them”?

Your loving understanding messages are a “must read” for non-autistics especially who seem to have a lot of problems of their own.

Exactly. Incredible the similarities, highlighting that prejudice is the great equalizer! I don’t know that human beings are capable of moving beyond their apparent need to control, have power over those they deem lesser than and their insatiable need for more. This is why I do not fear the singularity as so many others seem to. 🙂

As long as autism is pathologized rather than being accepted as a legitimate difference in neurology then I fear that the focus will be overwhelmingly on the negatives. This causes fear (which is not helped by the scare tactics of organizations like Autism Speaks). You and Emma, along with many others, are doing such an important, valuable job of spreading the message of understanding and acceptance to counter that fear. Thank you. xxx

Right, so the big argument is that autism has to be pathologized so that people in need of support will be able to get it. But I don’t see why the two need to be intertwined. Why must a need for help and support be cast in a negative, shaming light? Why can’t we just agree that there are those of us who will be able to flourish when given the appropriate accommodations and then provide them with those accommodations as best we can? (I know, this is idealistic of me.)

Exactly. We have a culture that sets up impossible standards of “perfection” and treats every difference from that model as a failing, a negative, something to be ashamed of. Everything from how we should look, how we should act, what we should be capable of doing. It is a poisonous, harmful climate in which to live that causes so many people to feel as if they are wrong, broken, failures. Acceptance of diversity — of all kinds — is the only way to go for a healthy society. I believe that receiving appropriate accommodations should be a basic human right, and must not be a grudging provision based on deciding that somebody is a lesser person simply because they have a different set of strengths and weaknesses from the majority. You say idealistic as if it were a bad thing, but dreams are important. Without the ability to imagine a better world we would have nothing to strive towards and nothing to drive us to push for necessary changes. Please don’t ever lose your idealism.

It amazes me how people can just sit in their computers ans design whatever without any regard to the truth, to scientific facts and most of all, to convey respect of a population who offers it and gets little in return.

This is precisely the reason I tend not to read any “autism-related” stories, stats, or even watch shows that I know have a character who is supposed to be autistic. Loads of people have asked if we watch Parenthood, and I just can’t. Not that I’m judging it, but I can’t do the fictional aspect. After reading “The Curious Incident of the Dog in the Nighttime”, it felt so much like having been taken advantage of. Like my sister-in-law, who loves to tell people that “her” nephew is autistic, because it gives her an in to more attention FOR HERSELF.
Now I’m feeling bitey, too. This is why we have no social life…because I don’t trust in lots of other people anymore….
They called me to say that the PT wants to try out a “sitting posture” device with M – but they at least woke up and thought that we should be asked first – they’re sending home the literature for it this weekend…I plan on asking him (and I bet the answer won’t be to their liking), but if anyone else has input about such a measure, I’d like to know. He is rather slouchy, but I think that should be his call whether he wants to have that “fixed” or not.
Oh, and we did a triennial questionnaire, which asked all the questions posed by the graphic above essentially, and I just answered it presuming competence, and to heck with whatever the school psychologist thinks.

I cannot tell you how many times I’ve infuriated various schools by filling out the questionnaires they gave me with answers like “not applicable” or “I don’t understand the question” or “none of the multiple choices offered accurately describe my daughter”
I’ve not heard of “sitting posture” devices, though it did make me think of a story my mother told me about her father who was forced to sit and the dining room table with a book under each arm that he had to hold without dropping while having a broom stick strapped to his back. Talk about Dickensian methods! Hopefully that’s NOT the type of thing they want to try…

This is what they sent home:http://www.loveatfirstsit.com/BackCare_Back-Up.pdf
I’m still not sure how I feel about it. Yes, he is slouchy, as I mentioned – as have I been, and back problems are plentiful on both sides of my family (we’re a bit on the tall side, all of us – M could end up being well into 6’4″). I’m just not sure how this would end up giving him abdominal core strength, if that’s the aim. I’d almost rather see if he’s interested in doing some exercises that I already do.

Re. the posture device, ask your pediatrician (or applicable professional) if he thinks there’s an issue with core strength where it would help. Otherwise, every slouchy kid should have the flyer sent home, too. And I need one too, because my posture sucks.

A posture device will weaken the underlying muscles and make any problems worse. Posture difficulty is really common among us because of co-occurring dystonia. I have lots of problems with posture, standing, stamina and the only appropriate way to address it is to work on strengthening muscles.

Thank you. Brookdale wrote back almost immediately and I appended the letter to my post. Note that while the letter appears reasonable on the surface, they are defending the graphic and never say they are going to remove or replace it, despite agreeing about the problematic nature of the words.

I received a reply as well, and agree with Sparrow in that it was “sorry, but…” I responded that their OWN words spoke to the fact that I was correct in my challenging re “enjoying restraint”. If you want me to post the exchange here, I will – it’s kinda long and I don’t want to be a page hog.

Whether you add it here or not, feel free to also add it on my blog — either as a comment to the post or I can add it to the bottom of the post along with the response they sent me (and any further correspondence you might like to share) if you would like. (If you want to email me, it’s sparrowbird at gmail dot com.)

Thank you very much for your e-mail detailing your concerns and fears around the wording on the Additional Difficulties section on the Triad of Impairments diagram on our website.

You are completely correct, no one “enjoys restraint” and should be viewed as the very last option, only to be used by trained professionals to prevent an individual from hurting themselves. Indeed any form of restraint shows a failure in preventing the initial confusion / fear (or whatever the motivating point may be) from escalating to the point of crisis someone would need to get to, to require the last resort of restraint.

All Brookdale care staff are recruited having identified a core ethos of person focused care within them, we then train them to have a real understanding of what it is to live ASC (some of this training is delivered by those living with Autism) and in Securicare, none pain holds and breakaway techniques.

I appreciate the wording on this standard Triad diagram could be clearer. The sentence “Appears to enjoy being held/ restrained,” is trying to explain in lay terms, those living with ASC who are hyposensitive, who on occasions feel benefit in it items such as a weighted blanket.

I am sorry if this web page gave you concerns. When training to explain “Autism” in broad terms it can fail to describe accurately the real people we both support.

As you are very aware, if you have met one person living with ASC, you have met one person, as we are all individuals with strengths, weaknesses, fears and hope, if with live with the added pressure of ASC or not.

Thank you for your quick response. I do have to ask that the word choice be addressed and fixed. My son uses a weighted blanket. It isn’t restraint, it’s more like swaddling that is under his control. Restraint is not controlled by the person who desires deep pressure contact – a lay person is going to interpret restraint as I have.

I just ask that “Appears to enjoy being… restrained” be removed – replacing it with “bear hugs/being held” or the English equivalent. In your own words in your reply, you speak of restraint as “the very last option, only to be used by trained professionals to prevent an individual from hurting themselves”. If this is the case, it CANNOT logically be included in the phrase “appears to enjoy being…”

I understand that if you know one person with autism, you know one person with autism. Most people don’t. Most people will see restraint and think it’s ok. They won’t see that it’s something only professionals should do. They’ll see that some autistic people ENJOY it. Words matter – a lot.

It might not be a quick fix for your site, but I deeply feel it’s a necessary one.

I hope this makes sense. I am a mom of a child on the spectrum. I am an advocate.

Just read… I dislike the response. It’s one of those, sorry this upset you however… responses. And not once does he reference the fact that people have DIED because they were restrained. Perhaps he needs to watch this – http://stophurtingkids.com/the-film/

It took me a while to calm down enough to respond to Brookdale’s representative. But here is what I replied to him:

Dear Robert Myers,

It is good that we agree on the undesirability of restraint as a first-line practice. It is also good that we agree that the wording on the graphic is unclear. I appreciate that you are sorry if the page gave me concern, but I am unclear as to your choice of action from this point forward.

It is clear to me that the graphic, as is, does not belong on the web site of an institution that care about Autistic people and strives to treat them in the most compassionate and professional manner possible. You appear to be aware that restraint can kill, thus your reassurances about the high quality of the training of your staff. If every effort is made to avoid ending up in a situation where restraint is required, then it is obvious that you share my belief that there is a world of difference between “weighted blankets” and “restraint.”

Why then do I not see any assurance in your letter that the graphic will be removed from your web site or revised? The graphic is concerning and, as it is currently written, it is deeply offensive. It needs to be removed or changed so that people are not led to believe that it is acceptable to restrain members of a vulnerable population against their will because of a mistaken belief that it will be enjoyable to Autistic individuals.

Are you able to offer me your reassurance that something will be done about this troubling and dangerous graphic?

Some of these things don’t bother me as much (beyond word choices) but the enjoys being restrained is just such a huge misinterpretation! Also, the whole defaulting to “child” thing is troublesome.

More accurate might be “enjoys physical pressure.” Some people only get this when restrained, sure, but that sounds like a problem of the care giver not meeting the sensory needs of someone in their care. (I will note that some meet this need through consensual restraint, but in those cases it’s something that needs to be negotiated so that safety and actual wants of the individual being restrained are respected. Most people assume consensual restraint is sexual but it isn’t always! Sometimes it’s just about having deep pressure needs met. Also, a word or gesture to let those restraining them know they are done thank you or a way for the individual to end the restraint. Though I’d be leery of applying this to minors because of power dynamics involved.)

Clearly we and the professionals don’t know what autistics feel or think. We learn from those who can learn to communicate. Do autistics understand each other and if so, how do they communicate? Reading about the bliss experienced while stimming and obcessing takes some pressure off to try to make kids happy. Learning that meltdowns are not behavioral, but sensory overload fosters compassion not anger. I have read blogs of some parents wanting to control behavior for fear of embarrassment. Why would you feel embarrassed if your child was in pain? Many are aware of autism, but we have so much to learn. I sense the anger from many bloggers that the professionals don’t get it yet. It’s up to those who know to help us understand. I agree that we all must unite together to keep the conversation upbeat and informative.

What’s the best way to persuade or convince? You’d think through debate or stating the reasons or examples and present your opinion or the facts supporting your point. Actually the most powerful way to convince is through fear. When we operate from fear we are not able to use our critical thinking or be discerning. Being a parent puts all of us in protection mode and at times that means we do fear for our kids well being. But don’t let “experts” lead us away from what we know makes sense for our kids. Let’s face it, when our “emblem” is a puzzle piece I believe that gives us all carte blanche to join in the solution and yes that includes our kids themselves! Be inquisitive, be investigative, don’t let fear be your guide.

Somewhat off-topic, but speaking to pretty much everything Ariane has to say on the topic of her beloved Emma.
Helen Keller, she somewhat miraculously supported into communicating, here speaks of “hearing” Beethoven’s Ninth Symphony on the Radio, by way of placing her hand on the vibrating diaphragm of the radio’s speaker.
It strikes me that Emma and so many Emmas similarly “hear” the “sounds” of the universe, by interfacing with all that is with their very being.
Ariane’s support for Emma, the community of support Ariane plays part in catalysing around Emma (and all our Emmas), works to see Emma communicate her inner life, just as others won through to seeing HK do this.
Maybe we don’t yet see the radio. Maybe we don’t yet know that the radio of today is playing what it is. Maybe we and Emma aren’t clear that Emma is placing her hands on that radio’s diaphragm. Maybe Emma is only working towards telling us what she is “hearing”.
It strikes me, that what Ariane calls “resistance”, and what Emma is doing with her string, is contributing to drawing together an inhabited frame of reference which might allow Emma to communicate to us what she is “hearing”, as the orchestra of our collective life and arrangements plays

“I recognized them instantly as voices more ecstatic, upcurving swift and flame-like, until my heart almost stood still. ” – This describes my feelings almost exactly when I watch Emma write. It is like nothing I have ever experienced and other than her occasional utterance and perhaps identifying the letter she is pointing to, I watch in silence. I know this was not the focus of your comment, but as I read Helen Keller’s words from the link you so thoughtfully provided, I couldn’t help but identify with my own experience of witnessing my daughter as she expresses herself.

I’m wondering how much attention to draw to this. It turns out I’m in at least one linkedin group with this company. I would like to link to this blog, and stress that words matter, but I’m not quite sure how to do this in a professional manner (needed in order to not get banned from a group). Any thoughts/suggestions are greatly appreciated.

Oh my goodness!! This is so wonderful. Thank you so much Sparrow and PK!! This is very, very encouraging. Sparrow, I thought your follow up letter, while respectful as you always are, yet insistent was terrific!

Thank you! As you know,I had to give myself a “time out” before I followed-up, but I’m glad I did and stayed calm and didn’t give up. Not only does the graphic have the most offensive and dangerous statement removed, but those of us who wrote to Brookdale sent a very clear message that Autistic people and our allies are “out there” watching what’s going on and care about what happens to Autistic people and how they/we are treated and talked about. That is an “awareness” I can support — the awareness that Autistic people are reading, listening, thinking, and communicating our values and demands. We value and demand respect and a presumption of competence!

Love that! “Autistic people and our allies are “out there” watching what’s going on and care about what happens to Autistic people and how they/we are treated and talked about. That is an “awareness” I can support — the awareness that Autistic people are reading, listening, thinking, and communicating our values and demands.” Yes!!

So much YAY – got an email from them letting me know about the change. I thanked them for listening and respecting our input and concern – and suggested they get “plugged in” to the autistic community and the abundance of experience there. 😉

Oops, sorry didn’t read this far. ‘Maybe’ is a typo, should be ‘May be’, but I suppose they changed it in a rush. Honestly they should all say ‘May’ at the start, and it should be clearer that all the bullet points are examples that *might* appear, and it’s unlikely that anyone will have them all.

Of course! Restraint is good – er, pleasurable – if one is doing the restraining. It feels so GOOD to be Powerful; to control someone else, to force them to do YOUR will at their expense – so much so that all manner of lies and other propaganda are put up so as to enable further abuse.

At Hadamar,(I think; it may have been one of the other five euthanasia centers) they celebrated the murder of the 10,000th ‘Useless Feeder’. The drink flowed freely, and the good Nazi doctors and other murderers got all good and twisted-drunk.

I’m glad someone else has seen, at least to some degree, the unpleasant reality behind a great deal of ‘treatments’ regarding autistic people. It’s not about helping such people.

It’s about PUNISHING us – as if we CHOSE to be autistic, with the goal of flouting our righteous betters, who *chose* to be Normal.

If the above statement sounds entirely too-far-fetched to be believable, witness the popularity of “The Secret / Law of Attraction/ What the bleep do we know?” The reason this line of thinking is so popular is that it confirms what so many people’s pre-existing prejudices – namely, that the world is just, that people control their own destiny (to a God-like degree, even) and that if something good happens to you, you must have MADE it happen.

(‘Cause you’ve got the Secret, eh? What’s the chant / spell / drug(s), fetish? Where do I get one?)